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Visualize This

There is a box and it sits on a very high shelf. When you go to get the box down from the shelf, you cannot reach it. You think you can reach it, you get a stool, and your finger can touch the box, but the box just changes position on the shelf, still out of reach. So, you go and get help from a friend who is taller than you, and the box comes down from the shelf. Only now do you notice the box is locked. You look around, and find a bunch of keys, but none fit. So, you put the box back on the shelf for a while, until the right key can be found. You hope the key will be here soon and that your friend will still be there to help get the box down for you again. You know, deep in your heart, that all of the things you need to open the box will arrive, when it is time.

I hope that you will join me to help those other children and my doctors to get closer to finding the key to our box...

Excerpt from Sarah Hill’s direct mail, July 7, 2005

 

 

Seeing Is Believing
Ten-year-old Sarah Hill hasn’t let a rare disease slow her down. She’s written a book and participated in a “try-athlon.” Now she’s even established a Wilmer foundation.


A budding journalist, Sarah puts the finishing touches on her first manuscript.

The first thing you notice about Sarah Hill is the way her eyes draw you in. Bright hazel, they glisten beneath long lashes, belying evidence of any trouble. But since she was a toddler, Sarah, 10, has been battling a rare eye disease that can accompany juvenile rheumatoid arthritis. The same inflammation that plagues Sarah’s joints afflicts her eyes. Called uveitis, the rare complication can cause blindness.

When Sarah was 18 months old, she awoke from a nap with a swollen knee. Bob Wood, director of Allergy and Immunology in the Department of Pediatrics, and Sarah’s primary pediatrician, diagnosed JRA, an incurable autoimmune disorder in which the body attacks itself. Ed Sills, director of pediatric rheumatology, confirmed the diagnosis.

Sarah’s uveitis emerged when she was 4. From then on, she’s needed daily steroid drops in each eye, and, later, weekly injections of a powerful drug called methotrexate and a daily oral drug called cyclosporine, usually used by transplant patients. She’s had two surgeries in which tiny tubes were implanted in her eyes to drain fluid associated with glaucoma. Thanks to vigilant treatment, Sarah’s vision is now perfect, says her primary ophthalmologist, Wilmer’s Douglas Jabs.

Sarah, the daughter of Peter Hill, clinical director of the Department of Emergency Medicine, has been lucky. She knows it. Other children like her have not fared as well. They haven’t had the benefit of expert clinical management on the part of Hopkins physicians—Jabs, Wood, Sills and glaucoma specialist Harry Quigley among them. So, entirely on her own, Sarah came up with a way to help those children, and her precocious plan is already taking effect.


Doug Jabs checks Sarah’s eyes regularly for inflammation. (Photo credit: Michael McElwaine)

Just 20 years ago, 40 percent of children like Sarah went blind from uveitis. Aggressive therapy and early surgical intervention have reduced the incidence to 10 percent. But Sarah’s long-term prognosis remains uncertain. That’s because research on uveitis—which occurs in only 10 percent of children with JRA—is scant. Little is known about how the disease progresses into adulthood; in part, it is difficult to do research on rare disorders.

When Sarah kept asking Jabs questions about her future, there were no answers. He told her the only way to learn more would be through a large, multicenter prospective study. And that, he said, would cost money. Sarah’s mother, Hope, warned Jabs to be careful about mentioning money because Sarah just might take on the challenge of raising it.

Sure enough, this past summer, with help from Wilmer’s development office, Sarah launched Kids’ Uveitis Research and Education (K.U.R.E.). Her dream is for Wilmer to use the proceeds to conduct a study of children with uveitis and track them into adulthood. This study, she hopes, will help doctors learn more about how the disease progresses and which treatments yield the best results. Through the study, some of these children, Sarah believes, might be brought together. “A lot of kids will go blind,” Sarah says. “I want them to know they’re not alone.”

In a direct-mail appeal for funds, Sarah, a fifth grader at Garrison Forest who aspires to become the next Katie Couric, wrote, “I’m very lucky. I have the best doctors, and I get the best care. I still have great vision. I wish all children like me were as lucky.” To describe life with uveitis, she also wrote a parable (see sidebar, right). Inspired by Lance Armstrong’s “Live Strong” yellow bracelets, Sarah began selling K.U.R.E. woven wristbands for $5 each.

The response was overwhelming. Within two months, Sarah had raised more than $12,000. A front-page Baltimore Sun story generated more support. Her Web site sparked worldwide interest. And recently, her parents’ friend, Charlie Reuland, Department of Medicine administrator, organized a “Try-athlon for Kids.”


Peter Hill prefers times like these with Sarah, as opposed to Fridays, when he has to administer her shot.

But Sarah worried that side effects from her Friday injection would sap her energy for the Saturday event. The next day, though not feeling her best, Sarah found the strength to run, along with 60 other children who ran, rode bikes and swam laps with zeal. Sarah presented awards at the close of the event, which raised more than $800 for K.U.R.E.

“We’re so proud of Sarah, not only for her unyielding strength and determination, but for her genuine concern for others and her desire to help those in need,” observes her dad. “It’s not easy for any kid to live with a chronic disease.”

Lingering side effects from eye treatment and joint pain sometimes make it difficult for Sarah to sleep over at a friend’s house on weekends. More than anything, she wants to be treated like “a regular 10-year-old kid.” Except for the big protective goggles she wears while playing field hockey, one would never guess otherwise. She loves hanging out with girlfriends, fussing over hair, nails and jewelry.

So far, Sarah has raised roughly $38,000 for K.U.R.E., just $2,000 short of Wilmer’s first goal. It won’t be long before wristband sales and events bring in the rest. K.U.R.E. research has already begun. The main database structure is almost complete, and a “data extraction tool” is being developed.

Sarah has just finished writing a book, I’m Not Ready Yet. Frustrated that other books about uveitis and JRA don’t address the disease from a child’s perspective, Sarah decided to write her own, infusing it with humor. “I want to give the book to doctors’ offices. I want to give it to kids with uveitis, diabetes and other stuff. My cousin is doing the illustrations.”

The book is based on her own experiences. “Every Friday, I have to get my shot. I used to walk downstairs and say, I’m not ready yet.”

In a running dialogue, the main character, like Sarah, says she’s not ready for her shot either. She needs her teddy. She needs her friend. She needs just one more thing before her father can give the injection. Ultimately, the narrator discovers that everything she needs to brave the shot she already has deep inside her.

Judy Minkove

To make a donation to K.U.R.E., visit http://mysite.verizon.net/resqpfbh/kure. Bracelets can be purchased for $5 at Wilmer. Or, send donations and requests for bracelets to K.U.R.E., c/o Wilmer Development Office, Wilmer 112, Johns Hopkins Hospital, 600 N. Wolfe St., Baltimore, MD 21287.

 

 

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